Being dyslexic and using the sentence “I hate words” is something I do very regularly. In the NHS we often love using new and exciting buzzwords that demonstrate new initiatives which are going to make huge changes to the way we work. Often they do. But I frequently find myself grabbing a dictionary (more likely the internet) to look up what the word means. For non-health and social care professionals navigating through these words can be just as daunting as asking a person with dyslexia to be part of a spelling bee. It is easy to forget you are using these words until you get a bewildered look from a family member who is trying very hard to decrypt your sentence whilst holding in the urge to go “what?”.
‘Co-production’ is one of those words that we like to use but which often gets that ‘you’re doing what?’ response. Even when we do know the meaning of the word and can explain it in meaningful ways, are we putting it into practice in its true form?
I’m a children’s Occupational Therapist working for NHS Shetland. I have been funded via theNES AHP Careers Fellowship to deliver a project during the pandemic. The project aimed to explore how we can improve the health and wellbeing of children and young people with neurodevelopmental differences in Shetland using co-production. I wanted to use co-production approaches to find out what we could do better or differently. “Co-production is a way of working that involves people who use health and care services, carers and communities in equal partnership; and which engages groups of people at the earliest stages of service design, development and evaluation” (Coalition for Personalised Care, 2020). Sounds straightforward, right?
Through delivering patient-centred care we are constantly engaging with children, young people and their families directly about their health care. It was clear from the many conversations through my Children’s Occupational Therapy role that a lot of families were coming to our service with similar concerns around eating, sensory, sleep, behaviour that challenges, and toileting. Access to training had always been difficult prior to COVID-19 as it would often require people to attend training in person on the mainland. With only two forms of transport off Shetland (a flight or a twelve hour boat trip), as well as the additional cost of travel, training was not easily accessible. Families agreed that they would appreciate more training in the above areas and this is when I applied for funding from NES AHP Careers Fellowship to deliver training events in Shetland which both families and professionals could attend with the aim of sharing knowledge and expertise. Of course I was confident that I had successfully engaged in co-production to inform my project proposal.
There I was, ready to leap forward and start looking at producing outputs when someone questioned me. In a discussion with Shetland’s Engagement Officer for Healthcare Improvement Scotland she asked me more about how I had engaged with my target audience. It quickly became clear that I had not engaged in true co-production.
I was in two minds, the first was almost shock at the fact I had not engaged in true co-production and the second was worry at the realisation I had to do even more work in an ever decreasing timescale. Although I had spoken to families, my conversations were only with the families who had engaged in our Children’s Occupational Therapy service and the conversations I had subconsciously directed families to come to the same conclusion that training was the way to meet this need.
Pause. Take a deep breath. What happened next was worth it.
What felt like going back a step actually meant that my project really benefited my target audience. The key was to engage my target audience at every stage of the project, especially right at the start. I began by reaching out to families through social media and third sector colleagues across Shetland, encouraging families to answer these questions:
- What diagnosis are you interested in?
- What currently works well in Shetland for your family?
- What do you think the needs are?
- What do you think the opportunities for improvements are?
- How might we achieve this improvement?
Families were able to share their experiences through a number of means including two virtual group meetings which took place during the first COVID-19 lockdown. These five very open-ended questions allowed families to discuss whatever they wanted. I was initially worried about leaving the questions so open in case families identified improvements out with our project scope. However, for the majority of the responses they consisted of areas of improvement that I had not even thought of, and simple solutions to issues that hadn’t even crossed my mind. It was amazing to think that in my haste to start my project I almost missed out on the most valuable resources available which of course was the engagement with families.
Following the success of the first engagement activity we then worked with families to create the public survey. We had an astonishing 142 responses to our survey from the wider Shetland community on how we could improve the health and wellbeing of children and young people with neurodevelopmental differences. Then as the project continued it provided more opportunities for families to engage.
Although my initial thinking was right, that training was something that families wanted, families were now partners in decisions regarding training. Furthermore, our project was able to expand beyond focusing on just training and support children and young people in ways that training could not. Creating an information page allowed people to share their knowledge of the support available to families locally and nationally instead of different people knowing small pockets of information and families having to seek this out. Piloting our All Ability rugby group aimed to break down the barriers currently stopping some families engaging in sports, including sports sessions being too busy or even the demand in a session being too high. This pilot group has huge potential to continue to encourage inclusivity and support coaches to have the confidence to meet the needs of children and young people with neurodevelopmental differences within their groups.
So, I urge you to take a moment and really look at how we use engagement. A word is so easy to use but even harder to truly do…and it’s worth it.
For more information about AHP Careers Fellowship Scheme contact the team at AHP.Fellowships@nes.scot.nhs.uk
Charis Scott, Children’s Occupational Therapist, Shetland
Follow Charis on Twitter @CharisScottOT